My Teacher, Friend, and Now Guest Blogger

Background: I met Alison Larriviere at St. Catherine of Siena School many years ago when I had the pleasure of teaching two of her three sons in Prek-4. Alison was a great mom who was involved in the school and in our classroom activities.  She also became a friend to me and my family.  She was my “go to person” when Ken got sick.  She had worked in the transplant department at Ochsner hospital and in the dialysis clinic.  I remember sitting on my living room floor as Alison informed me about the journey that our family would be taking with this kidney disease.  She gave me so much useful information and even “tutored” me on the art of asking the right questions when talking to the doctors. So as we continue on this journey I knew I wanted Alison to be a “blogger.”  She has so much experience and information to share. I thank Alison from the bottom of my heart.  She will always be an “adopted Roig” and most importantly my friend. We love you Alison!!!!

Hi everyone, 

I have been incredibly blessed with the privilege of knowing Mrs. Pat and Mr. Ken for over a decade as my children’s Pre-K teacher and her husband but more importantly as my dear friends. I have also been beyond fortunate to have the wonderful opportunity to serve (since 1994) as a transplant nurse working with the most incredible staff, patients and their loved ones who have taught me about faith, courage and hope during unimaginable times such as these for the Roig family.

People with kidney failure who qualify for transplant surgery have two basic options: stay on dialysis or get a transplant. Those receiving a kidney transplant generally live twice as long as those who stay on dialysis and are not restricted by the challenging routine of dialysis therapy. There are not enough deceased donors for the number of people who need kidney transplants. Although living donor kidney transplantation is more common, there are still many myths associated with living donor kidney transplantation.

For Mrs Pat’s wonderful blog, I have offered to present a little more detail regarding kidney donation and dispel some of the common myths regarding kidney donation. Much of this info can be found on the National Kidney Registry website which helps to facilitate LIVING KIDNEY DONATION:

• Anyone who meets the following criteria could be considered for possible donation: 
• Age 18-65 
• Overall good general health 
• Healthy body weight (Body Mass Index < 34) 
• No high blood pressure 
• No diabetes or borderline diabetes 
• No kidney disease

• All testing and financial requirements would be handled by the recipient’s insurance. There is NO financial burden to the donor. Surgery is laparoscopic. The donor stays in the hospital for approximately 24 hours and most can resume their regular activities within 2 weeks! *Out-of-state donors can also be considered and the majority of the testing can be done close to that donor's home before the actual surgery.

• Donor Life Expectancy: Donating a kidney does not reduce a person’s life expectancy. Interestingly, people who have donated a kidney outlive the average person.  Some believe that it is because only healthy people can be selected to be living donors. Others think that the altruistic act of giving the gift of life and the happiness and satisfaction that follows has a positive impact and leads to a healthier and longer life.

• Complications: The possibilities of post-operative complications include bleeding, wound infection and fever. Most complications are generally short-term and can be addressed with quality medical care.

• Mortality Rate: Although more than 6,000 living donors in the United States donate their kidneys every year, the procedure is not without risks. The donor surgery has a .03% mortality rate (i.e., 3 in 10,000). 
  
  
  Myth #1: A kidney donor will have to take medications for the rest of their life
  Fact #1:  A kidney donor will be given prescriptions for pain medication and stool softeners at discharge from the hospital. These are only for the immediate post-operative period, after that time, a donor does not have to take medication
   
  Myth #2: A kidney donor will have debilitating pain for an extended period of time.
  Fact #2: A kidney donor will have some pain after surgery from both the incisions and related to gas and bloating. This pain will diminish in the days following surgery and can be controlled with pain medication if necessary.
  
  
  Myth #3: A kidney donor will be on bed rest following surgery.
  Fact #3: A kidney donor will be out of bed and walking independently before discharge from the hospital.
  
  
  Myth #4: A kidney donor will be in the hospital for an extended period of time after surgery.
  Fact #4: A kidney donor will be hospitalized for two nights (i.e. if surgery is on a Tuesday, the donor will typically be discharged on Thursday).
  
  
  Myth #5: A kidney donor can no longer participate in sports or exercise.
  Fact #5: A kidney donor should be able to return to regular activities and exercise at approximately 4-6 weeks following surgery.
  
  
  Myth #6: A kidney donor will have to follow a new diet plan following donation.
  Fact #6: A kidney donor should eat a healthy, well balanced diet. There are no dietary restrictions following donation.
  
  
  Myth #7: A kidney donor can no longer consume alcohol following donation.
  Fact #7: While excessive alcohol use is always dangerous, a kidney donor can consume alcohol in moderation.
  
  
  Myth #8: A female kidney donor should not get pregnant after donation.
  Fact #8: A female kidney donor should wait 3-6 months’ time after donation to become pregnant. The body requires time to recover from the surgery and to adjust to living with one kidney prior to pregnancy.
  
  
  Myth #9: A kidney donor's sex life will be negatively affected by donation.
  Fact #9: A kidney donor may engage in sexual activity when they feel well enough to do so.
  
  
  Thanks for sharing this opportunity for such a tremendous gift with those close to your hearts!!!!!
  
  
  Love,
  Alison

What Inspires You?

As I thought about my blog this week I wanted to talk about inspiration.  What does inspire mean?  It means to stimulate action, to motivate, to affect or touch, to draw forth, to be cause or source of.  I have been inspired by many people during this journey with Ken, my family and friends. I am inspired by ordinary people who do extraordinary things like teachers (a group near and dear to my heart), our military men, women and their families, first responders police, firefighters and EMS, nurses and doctors, those who care for the very young and the very old. I am inspired by lyrics of a beautiful song and a passage from a well written book   I am inspired and reminded of God’s love by rainbows, waterfalls, sunsets, butterflies and a child’s smile.  Each person is inspired by someone or something many times during a lifetime.

Today I want to talk about a dear friend who inspired Ken and me.  Her name is Charlotte and she has been my friend since Kindergarten at Holy Name of Jesus School many years ago.  She was the first person, not related by blood, who offered to give Ken a kidney last April as his kidneys failed.  I wanted to know what inspired her to do this.  What were her thoughts, her fears, her worries?  What did her husband and children think about this?  We talked last night and she told me about her decision.

Charlotte said that when I first told her about Ken’s kidneys going into End Stage Renal Failure she was surprised.  I explained that all of our children and his siblings were not matches for his B blood type.  She said the idea immediately popped into her head that she would donate.  She knew her blood type was O.  She talked to her husband and her sons.  They were all behind her decision 100%.  She contacted Ochsner Hospital and began the process.  She admitted to me she did not know everything that was involved but the transplant coordinator gave her lots of information and answered all her questions.  I asked her did she have fears or worries during the process.  She told me there was a feeling of peacefulness she had during that time.  She knew she was the “one”.  She wanted to do this and she was committed.  She said the staff at the hospital treated her with such kindness and respect.  She passed each test with “flying colors” and was more and more confident that she would be the “one.”  She told me as funny as this may sound the testing process was one of the most interesting experiences she has ever had.  She was amazed at what the tests revealed about her overall good health.  The surgeons talked to Charlotte about the transplant surgery and setting a summer date to accommodate her teaching job.  She was anxiously awaiting the phone call after the last test results were in.  She was picking blueberries in Mississippi with her family when the call came.  The transplant coordinator told her she had disappointing news – her kidneys were too small.  She said she was so sad.  She was ready to give this gift but it was not meant to be.  She told me through this whole process she knew she wanted to help a friend.  That is what drove her to do this and she knew if the roles were reversed Ken or I would do it for her.  As we ended our conversation she told me she added “donor” on her driver’s license. Ken and I are blessed to have so many angels like Charlotte in our lives.

So this week think about who or what inspires you.  You will be amazed at the inspirations all around you. 

Keep your comments and questions coming in.  Ken and I love hearing from all of you!

Until next week may the Lord carry us on our journey for a kidney for Ken,

Pat

Happy One Month Birthday Blog!!!

One month ago with the guidance of my son, Greg, and my daughter-in-law, Camille, I started this blog.  It has been one of the best decisions of my life.  During this past month I connected with people I did not know, but who were going through similar journeys like ours.  I connected with friends I had not been in contact with for years.  I connected with family members I had not talked to for a long time.  And I made new friends along the way.  This blog has empowered me to try and make a difference in others’ lives.  And I thank all of you for your continuing prayers and support.  It is AMAZING!!!!!

I wanted to provide you all with an update on Ken. Things are status quo with him at this time. The concern is that the longer he is on dialysis the more the doctor has to adjust the treatment to keep him feeling okay. It is the law of diminishing returns in effect. Dialysis does not take the place of his kidneys.  Those hard working kidneys are sophisticated reprocessing machines that help filter waste, excess fluid and toxins from your blood. Dialysis can replace some of the kidney’s important functions, but cannot take the place of a kidney.  So the journey continues for the “gold standard treatment” of End Stage Renal Failure (ESRF), a kidney transplant. Finding a kidney for Ken continues to be our ultimate goal. Ken and I are keeping the faith and are hopeful there will be good things happening in the future. 

Also, I have recently received quite a few questions from many of you sent to akidneyforken@gmail.com and so I wanted to take this opportunity to answer a few of them. I am naming this segment “Pat’s Mailbag.”

How did Ken get this kidney disease?

As I have previously stated, Ken was an active man who exercised regularly and took care of his health.  He went in for his yearly checkup and the doctor noticed a high level of protein in his urine.  He had no symptoms and was feeling great.  As we learned later, many people may have a kidney disease, but don’t realize it until symptoms develop.  By that time permanent damage has been done to the kidneys.  Luckily, we caught it early thanks to his annual physical. After a kidney biopsy was done, Ken was diagnosed with Membranous Nephritis. But the cause was unknown. No one in his family had any kidney problems.  Ken did not have underlying conditions like diabetes or high blood pressure that could cause kidney disease.  After more tests were completed the cause of Ken’s kidney disease was classified as idiopathic (arising spontaneously with the cause unknown).  We learned that 75% of all cases are from unknown causes.

How does one become a potential donor?

This question has come up quite a bit which is a testament to the amazing individuals following this blog. First you must have a compatible blood type to be considered.  Ken has B blood type so only a B or O blood type could be considered as a possible donor.  It does not matter if your type is positive or negative. If you do not know your blood type, one easy and great way to find out is to donate blood at your local American Red Cross. They will give you a donor card listing your type. The next step would be a phone interview with the Kidney Transplant Coordinator at Ochsner Hospital in New Orleans. This is the hospital where Ken is a patient and would have the transplant surgery. The transplant coordinator decides if the person is a potential donor.  After that, a series of blood tests are performed to see if the potential donor’s blood and Ken’s blood are compatible. Once these tests are done and the results are favorable, the donor would be required to spend one or two days taking more tests to assess his/her health.  If you want more information on becoming a donor, please email me at akidneyforken@gmail.com and I can put you in touch with the transplant coordinator at Ochsner.

How can I get “A Kidney For Ken” shirt?

Lastly, people have been asking about the shirts Greg and Camille wore at the marathon in Vancouver.  We are still trying to get information on cost and ordering.  We will be posting it on the blog as well as sending emails to those of you who have expressed interest in the shirts.

Keep the questions coming to akidneyforken@gmail.com. I love hearing from you all!

Until next week may the Lord carry us on our journey for a kidney for Ken,

Pat

Running For A Kidney, Eh?

When my mom asked me to be the inaugural guest blogger, I was honored but with it came a great deal of pressure. This blog has taken off in a way that we never really expected, and especially in such a short period of time. Thanks to all of you spreading the word and my mom’s wonderful writing, this blog is now being followed by many people who have never even met Ken or as I know him, Pops. The pressure was now on me to deliver a strong blog entry. This past Sunday, my wife, Camille, and I ran a marathon in Vancouver in support of “A Kidney For Ken,” and over that beautiful and often brutal 26.2 mile stretch I had lots of time to think about what I wanted to write. 

For a non-runner like me, running a marathon is a crazy experience. You train for months over end running mileage that should be reserved for cars. And finally when the day comes, you are excited, nervous, afraid, and somewhat questioning your sanity. Your body literally shuts down at mile 20 and you just have to figure out how to push through it. But in the midst of that pain from hitting “the wall,” you are surrounded by strangers lined up down every street and around every corner cheering for you. Camille and I wore our custom made “A Kidney For Ken” shirts (pictured on right) so our cheers were even more personal. People were high fiving us, cheering “Go A Kidney For Ken! You’re doing great!” I was even cheered for as if I was Ken, which I didn’t mind in the least. I can see why people run marathons over and over. The sense of community is something very special, and the support and love you receive from thousands of strangers in those few hours on the course is simply amazing. It is the same things that make this blog so special. As I mentioned earlier, “A Kidney for Ken” is now being followed by people that have never met Ken, but believe in the cause and have decided to follow the journey. So at about mile 22, it occurred to me what I needed to write. I wanted to shed some light on who Ken (aka Pops) is, and for some of you out there introduce him for the first time. And I thought I could best do that by sharing a recent story.

Over Christmas 2010, I came home to New Orleans to spend time with my family and was unusually on edge. I had an engagement ring in my pocket, and was planning to pop the question to Camille on New Year’s Eve. On top of that, I was planning to ask Pops to be my best man. I was a ball of nerves. The night I arrived, I didn’t want to wait until I was engaged and so I asked Pops right then and there to be my best man. He of course said yes and we talked about my proposal strategy and the fact that the wedding next year would likely be a destination wedding in Park City, a city very special to Camille and her family. We were both very excited, to say the least. A few days before I was hopping on a plane back to California to go propose to Camille, I went with Pops to his nephrology check up appointment. It was all bad news. His kidney functioning levels were dropping at an astoundingly quick rate and for the first time ever the dreaded “dialysis” word was discussed as a near certainty along with a discussion on having family members tested as potential donors. His kidneys were failing fast, and the future looked bleak. After the appointment, we stood quietly at the check-out desk waiting on some paperwork. I looked over and saw that Pops was fighting back tears. I could understand. He had been fighting this disease for so many years and winning. And now in one fell swoop, everything was up in the air. How quickly would he be on dialysis? Would we find any donors in the family? What are the options for dialysis? What are the risks of transplant surgery? How was his quality of life about to change? Just question after question filled my head. Surely this was why his eyes were full of tears. But when I questioned him about it, I was completely blown away. He only had one concern and one concern only. Would he be healthy enough to stand as the best man in his son’s wedding? And that right there best sums up the kind of father, husband, brother, friend, and man that Ken is. And on September 3^rd last year in Park City, with a dialysis machine set up back at the hotel, he in fact stood as the best man in my wedding and continues to be the best man in my life. 

Thanks to everyone for continuing to support this blog. If you like the shirts that Camille and I wore for the marathon and would like one, please email us at akidneyforken@gmail.com. We have received many comments from people interested in the shirts so we may have the printing company do another batch for us. Just let us know of your interest.

Until next week may the Lord carry us on our journey for a kidney for Ken,

Greg

113,000 and growing...

In addition to supporting Ken and his search for a kidney, we also started this blog to help create awareness for those at risk of or affected by kidney disease and to promote organ donation. April was National Organ and Tissue Donor Awareness Month. The Ochsner Multi-Organ Transplant Institute recently released these staggering transplant numbers:

• More than 113,000 men, women and children are on the national transplant waiting list
• Every 12 minutes another person is added
• In Louisiana more than 1,800 people are waiting for organ transplants
• Nearly 20 people each day die unnecessarily because there are too few organ donors.

Needless to say, the need for organs and tissues for transplants greatly exceeds the availability and the difference is growing every day. Transplantation gives hope to thousands of people each year. To celebrate that spirit of generosity and compassion, the Ochsner Multi-Organ Transplant Institute has been sharing transplant stories each day for 30 days. These stories highlight real people who have either received an organ, donated an organ or are on a waiting list. Because of your amazing support for this blog, Ochsner heard about “A Kidney For Ken” and asked us to be one of their Awareness Month stories. You can find our story posted on their Facebook page:

Visit the Ochsner Multi Organ Transplant Institute's Facebook page

I ask all of you to visit the page, like it, post comments if you wish, and share the link with your family and friends. As always, thank you for reading. 

Until next time, may the Lord carry us on our journey for a kidney for Ken,

Pat

PS: We have set up a new email account. You can now reach us at akidneyforken@gmail.com Feel free to email your comments, questions, blog ideas, etc. We would love to hear from you!!